Living With Lupus

No one really understands why lupus causes the body to attack its own tissues, but that doesn't mean those living with lupus can't take action against their disease. We examined pain control, symptoms, and what the future holds for treatment when Living With Lupus author Sheldon Blau, MD, joined us on Oct. 19, 2004.

The opinions expressed herein are the guests' alone and have not been
reviewed by a WebMD physician. If you have questions about your health, you
should consult your personal physician. This event is meant for informational
purposes only.

MEMBER QUESTION:What is better for treating lupus -- chemo drugs or prednisone?

BLAU:All of the above, and perhaps none of the above. That question is difficult to answer. It depends on the clinical presentation. It may be all of those drugs and it might be none of those drugs.

MEMBER QUESTION:How common is it for people to be on prednisone for life?

BLAU:Sometimes it happens, particularly with chronic diseases such as lupus, but most physicians like to use prednisone intermittently.

MEMBER QUESTION:I have been on 15-40 milligrams of prednisone for five years for the symptoms of lupus. I am wondering what the long-term effects of this treatment are, although I know I have no real alternative.

BLAU:The long-term effects of steroids are numerous and multiple; they are dose dependent and time dependent. The most common long-term effect is osteoporosis. Other long-term side effects include:

MEMBER QUESTION:I have been on prednisone for 22 years now, and now I have severe AVN. Will my bones keep getting worse?

BLAU:One of the side effects of prednisone is AVS, which is avascular necrosis. This side effect is usually irreversible and has to do with cell death in the bone, usually the hips, but it can also affect the shoulders, the knees, and the ankles. Once the AVN has occurred there's little that can be done, short of surgery. There are some exciting new prophylactic treatments for AVN, especially cholesterol-lowering drugs.

MEMBER QUESTION:We just lost Vioxx, and may lose Celebrex and Bextra. Remicade is getting some bad press, also. Do you see any good meds in our future to battle lupus?

BLAU:Yes. Once again, each patient is different. Lupus is a heterogeneous disease. Some people can get by without steroids; some need immunosuppresants.

MEMBER QUESTION:Could you please explain heterogeneous?

BLAU:Heterogeneous is due to different etiologies; that's what it means. It means lupus is not one disease but probably many different diseases that masquerade with many different clinical manifestations.

MEMBER QUESTION:What about the use of narcotics for chronic pain with lupus?

BLAU:Certainly narcotics have a place with chronic pain. There are many reasons for chronic pain with lupus.

"Usually the symptom of fatigue, which is so common in lupus, can be managed by raising the dose of prednisone."

MEMBER QUESTION:I'm starting to feel electric shock pain and tingling in my face. Is it possible to develop neuropathy in your face? I'd only heard of it in your arms/legs.

BLAU:Unfortunately it develops in your face as well. Tingling in your face may be facial neuropathy, especially the facial nerve.

MEMBER QUESTION:Do you see lupus patients ever benefiting from a biologic, like so many other autoimmune diseases are?

BLAU:Good question. Because the biologicals, namely Remicade, Enbrel, and Humira, often can cause elevation of double-stranded DNA blood tests (in 15% to 20% of patients) we prefer not to use them with lupus.

MEMBER QUESTION:What can you take for pain when you have liver damage?

BLAU:Most of the narcotics are metabolized by the liver. The only answer to that is to use smaller doses of narcotics or medications not metabolized by the liver. Since most the narcotics are metabolized through the liver, most narcotics may be used in smaller doses. The most hepatotoxic agent is probably Tylenol, and Tylenol should be avoided in all people in doses above 4 grams. In people with liver disease, small doses of Tylenol may worsen liver disease. In those cases it's preferable to give the narcotic without Tylenol.

MEMBER QUESTION:When you say a narcotic without Tylenol, do you mean Percodan?

BLAU:No, Percodan has aspirin. That would be a narcotic with aspirin. There are many narcotics with neither aspirin nor Tylenol.

MEMBER QUESTION:Since my initial hospitalization/diagnosis six months ago I am taking prednisone, methotrexate, and Plaquenil but continue to have severe fatigue and joint pain. Is this normal? They are gradually lowering the prednisone, so will I begin to feel worse?

BLAU:The dose of prednisone has to be individually managed for each patient. Usually the symptom of fatigue, which is so common in lupus, can be managed by raising the dose of prednisone. Of course prednisone is probably the most toxic of the three agents, and lowering it can result in fatigue, not uncommonly.

Also remember that there are many other reasons for fatigue in lupus. There is a high incidence of underactive thyroid disease; there is also a high incidence of anemia; and some patients actually break down their own red cells in what's called hemolytic anemia. So fatigue is not due to one phenomenon; it's multifactoral.

MEMBER QUESTION:I have been on Plaquenil for six months and I still have the side effects of diarrhea frequently. Is this normal, or should it have gone away by now?

BLAU:Diarrhea is seen as a not uncommon side effect of Plaquenil. It can usually be managed by reducing the dose and using Imodium. Some patients with lupus have diarrhea because of an ischemic colitis, and the presence of blood should alert the patient and physician to this most serious side effect.

MEMBER QUESTION:How long can a lupus patient stay on Plaquenil? Are there any known long-term negative effects besides possible eye damage?

BLAU:Yes. In the presence of renal insufficiency Plaquenil can cause muscle breakdown, so since patients with lupus usually have some degree of renal insufficiency, patients on Plaquenil should be monitored, not only for renal disease, but for muscle breakdown as well. I personally have had patients on Plaquenil for over 20 years.

MEMBER QUESTION:What do you think about long-term use of narcotics to treat our pain?

BLAU:Sometimes they're necessary, unfortunately.

MEMBER QUESTION:I'm on 3 grams of CellCept a day and have become frightened of the possibility of developing lymphoma. My doc says to not worry about that. Would you agree?

BLAU:Not totally. The long-term side effects of CellCept are still unknown. I would agree with your concern over the long-term effect.

MEMBER QUESTION:I am having terrible headaches, more like pressure at the back of the head. Is this a lupus headache? Or could the lupus meds cause this? I am on prednisone, Plaquenil, Neurontin, and Xanax.

BLAU:All of the above. Headaches have to be carefully evaluated in lupus patients, because associated with lupus are small aneurysms called mycotic aneurysms. The presence of headaches in patients with lupus may be due to these mycotic aneurysms or due to any of the medications that were mentioned. An MRI with contrast is how to evaluate headaches in lupus patients.

"In the presence of renal insufficiency Plaquenil can cause muscle breakdown, so since patients with lupus usually have some degree of renal insufficiency, patients on Plaquenil should be monitored."

MEMBER QUESTION:My lupus is currently under control thanks to Plaquenil and methotrexate. What are the chances that I will not experience another flare?

BLAU:About 40%.

MEMBER QUESTION:My daughter was diagnosed with lupus in November and Sjogren's syndrome was added as a diagnosis within the last several months. Prior to November she had numerous symptoms but no definitive diagnosis. She has severe pain due to degenerative arthritis of the spine, which is supposedly related to the lupus. Due to the narcotics she is beginning to experience digestive problems. Are any medications available without so many side effects?

BLAU:Narcotics uniformly produce GI problems, such as constipation. I routinely place patients who will be on long-term narcotics on stool softeners prophylactically.

MEMBER QUESTION:Is Neurontin a narcotic?

BLAU:No, Neurontin is an anticonvulsant that is commonly used for peripheral neuropathy, which as I mentioned before may be associated with lupus.

MEMBER QUESTION:I have had MRIs and show lesions in white matter from lupus migraines. Is this common?

BLAU:Yes. Lesions and white matter on MRI are very common in lupus, even without evidence of migraine headaches. Unfortunately the lesions on white matter on MRI are not diagnostic of lupus and may be seen in other conditions, such as Lyme disease, syphilis of the brain, and multiple sclerosis.

MEMBER QUESTION:Are the lesions and white matter common to the brains of lupus patients the cause of our brain fog -- our memory and concentration problems?

BLAU:Yes. Often they cause memory and concentration problems, and more recently it's been shown that thinking is disturbed in lupus with or without the MRI patterns of white matter. Formal mental tests of patients with lupus show numerous thought disturbances, such as:

MEMBER QUESTION:Can you discuss memory loss? Is there anything to help this? I also experienced burning and tingling of my tongue. Is this a form of neuropathy?

BLAU:Associated vitamin deficiencies should be corrected. If the memory loss is solely due to lupus, it's difficult to improve. The tingling of the tongue may be a form of cranial nerve neuropathy, particularly the ninth cranial nerve.

MEMBER QUESTION:I had a monoclonal paraprotein in one of my blood tests. Is this common in lupus patients (I've also got Sjogren's)? Does it go away, or is it something that needs to be followed?

BLAU:The monoclonal pattern is unusual in lupus but can be seen in Sjogren's and usually persists for life.

MEMBER QUESTION:Does the paraprotein indicate lymphoma?

BLAU:It may, but it's not diagnostic of lymphoma. A paraprotein means the patient is manufacturing immunoglobulins.

MEMBER QUESTION:I was prescribed Soma, 200 milligrams four times a day, by one doctor and then another doctor said I should not take it at all because it is a horse tranquilizer. What is your take on this drug?

BLAU:Soma is a muscle relaxant. It has, especially in the dose mentioned, a high incidence of somnolence (sleepiness). It may have been used as an animal tranquilizer, I don't know, but the somnolence limits its usefulness.

MEMBER QUESTION:Does GFR (for kidney function) fluctuate, or once the number is at a certain level, does it stay there?

BLAU:The GFR, which stands for glomerular filtration rate, is synonymous with renal blood flow, so GFR actually measures renal blood flow. The number is fairly constant except when renal disease occurs. One of the many rules in lupus is that the history is the destiny. If one does not have renal disease at presentation, usually, but not always, renal disease will not occur. Therefore, the GFR is an indication of renal disease.

MEMBER QUESTION:What is your opinion on DHEA? My rheumatologist has prescribed me 200 milligrams a day, and I am 22 years old.

BLAU:DHEA has recently been shown to be efficacious for lupus. The name of the drug is called prasterone. The side effects of DHEA are significant in that hirsutism commonly develops.

Also one must be certain in male patients with lupus before giving DHEA that an occult cancer of the prostate is not present. DHEA, being a forerunner of testosterone, is contraindicated in any situation where testosterone is contraindicated; i.e., cancer of the prostate.

MEMBER QUESTION:What can be done for vision problems (a slow eye, blurriness) caused by CNS lupus?

BLAU:It depends on what vision problems are due to. The most common vision problem in lupus is the formation of cataracts due to steroids. In addition, vision problems often occur because of vasculitis of the brain. An ophthalmologist should be contacted in all cases. Plaquenil should be monitored with regular eye exams.

MEMBER QUESTION:When I was diagnosed three years ago I also had a bone marrow biopsy because the blood tests showed monoclonal gammopathy. The results were normal and I was told the lupus probably was involved. Does this sound correct?

BLAU:The reason you had a bone marrow exam was the fear on the physician's part that you had multiple myeloma. Multiple myeloma commonly causes a monoclonal gammopathy, and that's the reason for the bone marrow exam. Many physicians will do a bone marrow on almost all patients with a monoclonal gammopathy to rule out myeloma.

"The most common vision problem in lupus is the formation of cataracts due to steroids. In addition, vision problems often occur because of vasculitis of the brain."

MEMBER QUESTION:What do you think about HRT in lupus patients?

BLAU:I'm against HRT, not only in lupus patients, but also in women in general. The recent evidence complied over the last two or three years shows hormone replacement therapy leads to an increased incidence of:

It's my belief that hormone replacement therapy should not be used in most, if not all, patients. Certainly birth control pills are contraindicated in lupus, because of deleterious vascular events.

MEMBER QUESTION:Is there a reason why someone will have a low ANA and after months it jumps way high?

BLAU:It's probably due to steroids. Steroids can sometimes suppress the ANA. Also, there is a variation in the titer of ANA.

MEMBER QUESTION:Are there patients with lupus with a negative ESR, ANA? If so, what percentage of patients with lupus? What advice should such patients seek?

BLAU:Good question. In my own personal series of several hundred people with lupus, 20% of them had a negative ANA. Most of them, but not all, had an elevated ESR. The combination of a negative ANA and a normal ESR with a normal urinalysis is most uncommon in lupus.

MEMBER QUESTION:What precautions or dangers might be present when seeking pregnancy and having lupus?

BLAU:Good question. Fifty percent of patients with lupus have anticardiolipin antibodies. These are often predictors of venous occlusion, and therefore lupus patients do have problems getting pregnant, and when they get pregnant there's a higher incidence of spontaneous abortions. All patients who are contemplating pregnancy who have lupus should have anticardiolipin determinations.

Intrauterine death is a third complication. Babies are often premature, and a not uncommon manifestation in a newborn is congenital heart block.

MEMBER QUESTION:Would you explain antihistones, anticardiolipid, and lupus coagulant? I have tested positive or high in all three.

BLAU:We in the field of lupus measure antibodies to various substances. Some are very specific, i.e. antidouble-stranded DNA antibodies for lupus. Similarly, some are very specific for lupus. Antihistones are very often a nonspecific immunologic finding and are not diagnostic of lupus but highly suggestive of an antibody to a drug. There is an entity called drug-induced lupus. In drug-induced lupus the incidence of antihistone antibodies is above 90%.

MEMBER QUESTION:In your experience has acupuncture or other alternative treatments helped organ involvement, such as renal disease, etc.?

BLAU:I have never seen acupuncture or alternative medication or therapy help lupus renal disease. I have seen renal disease that was very benign and not progressive. It's the job of the rheumatologist to predict which patients with renal involvement will get worse and go on to dialysis and which will improve with steroids or other immunosuppresants. Renal disease need not always be an ominous finding.

MEMBER QUESTION:I've been diagnosed with deep vein thrombosis and have tested positive for lupus. Could lupus have caused this (blood clots)?

BLAU:It was the anticardiolipins that are associated with lupus that caused the blood clots.

MEMBER QUESTION:Do you ever take your patients off their medications for lupus, or am I on them for life?

BLAU:No, patients often are on varying dosages and not necessarily for life.

"When I was in medical school most patients with lupus died. As of this transcription, fully 90% to 95% of patients live for 10 years or more."

MEMBER QUESTION:I have had lupus for 22 years now and have never been in remission. Does this mean I never will?

BLAU:The history in lupus is usually the destiny. If you've been on steroids for 22 years, the likelihood is you will probably remain on steroids.

MEMBER QUESTION:I have factor V Leiden and the anticardiolipins. Is Coumadin all I can take for both of these?

BLAU:Factor V Leiden deficiency is more commonly congenital, although it may be acquired. Patients with factor V Leiden deficiency behave very much like patients with anticardiolipin antibodies, namely an increased incidence of arterial and venous clotting. Therefore, these patients may have to be on Coumadin for life. Simply having a factor V deficiency and a venous or arterial episode is enough to be on Coumadin for a long time.

MEMBER QUESTION:Does being diagnosed with lupus SLE mean an automatic death sentence? It seems like it's only a matter of time, and not knowing how much, that it will attack your organs. Is there any hope?

BLAU:Certainly there's hope. Also, the prognosis in lupus is actually excellent. The prognosis over the years has increased dramatically. When I was in medical school most patients with lupus died. As of this transcription, fully 90% to 95% of patients live for 10 years or more, so the prognosis is really quite good, not bad.

MODERATOR:We are almost out of time. Before we wrap things up for today, do you have any final words for us, Dr. Blau?

BLAU:I would like you to be aware of the fact that lupus is different diseases in different people, and many people have a relatively benign course and do not go on to renal deficiency and the other complications of lupus. I have many patients who live relatively normal lives and have borne many children and these patients have lupus, as well.

MODERATOR:Our thanks to Sheldon Paul Blau, MD, for joining us. For more information please read his book, Living with Lupus .